- part time college student
- part time substitute high school english teacher
- “bachelor of fine arts”
- amateur musician
- wannabe artist
- unintentional writer
- wannabe intentional writer
- full time intestinal cripple
here’s something I’ve been thinking about:
sometimes I make fun of my situation (I mean AT LEAST you can use such a fucked up situation as joke material, right?) by casually dropping statements like “I’m handicapped” or “I’m a cripple”.
and sometimes people get concerned over this and interpret it as self loathing, and then they say something like “don’t say that!” or “that’s not true!”.
I understand that this comes only out of good intentions, but I would like to clear something up;
I think that ultimately everyone should be allowed to define themselves and their own body and situation and feelings how they want. And I feel fucking disabled! That doesn’t mean I loathe myself for it or feel depressed about it every day (although occasionally I do). When I say “I’m disabled/handicapped” I’m simply telling it like it is.
I’ve been sick for 2 years and 5 months now. I have crohn’s disease; a chronic illness which has severely compromised my health and especially my digestive system. I have no colon, I’ve lost some of my small intestine and I have a permanent ileostomy plus a forever stitched shut asshole after a string of 5 major abdominal surgeries. All of this has considerably limited my body’s ability to digest properly; to absorb fluids, calories, vitamins and nutrition from everything I eat and drink, and there are certain foods that I’ve had to give up altogether.
prior to all of this I was relatively more or less a regular, healthy person for 22 years.
going from living in that body to living in this body is kind of devastatingly different.
if you have a condition that limits any kind of basic function of your body (like walking, moving, breathing, eating, pooping, thinking, etc.) you are, by dictionary definition, disabled.
that doesn’t mean everyone in that kind of situation needs to feel that way or should define themselves like that.
I know about plenty of people with ostomies (in fact, the majority of those that I know about), that do not experience themselves as being disabled at all. perhaps they were sick for years until they finally lost their colon / whatever was bothering them and now they feel an increased quality of life from their previous situation. that’s great! that’s amazing. I’m just not one of those people.
for me it’s like this: I used to be healthy, my body was normal, but then it lost its ability to function like it was designed to. I generally feel worse and function worse. I experience this as a disability.
However, I realize that there are so many people whose disabilites are so much more serious and limiting than mine. I am very grateful that my situation is not worse than it is.
I also realize that it is hard for others, especially healthy people to categorize me or think of me as a disabled person because it is more or less impossible to see any abnormalities on my body unless I get naked. I understand and sympathize with this because I too was once a “regular”, healthy person and I know that at that point in my life I didn’t fully understand these things either, and didn’t try to.
healthy people always want sick people to “recover” or “get better” and I understand that desire, but sometimes that is just not an option, and that can be ok too.
if you ask me how I’m feeling and I answer honestly I might say “not great”
but if you then immediately ask me how I’m doing I might honestly say “great”
because those two factors don’t have to go together.
I work really fucking hard every day on finding ways to work around my disability so that my quality of life can be as high as possible and so that my life can be as “normal” as possible and so that I can accomplish as many of the things I want to accomplish as possible. I am very grateful that I am able to do this and this is why I am doing fine, most of the time, even during some times when I am not feeling fine.
I’m sick. I’ll always be sick. It’s ok. I’m fine. I expect to continue being fine.